Crohn's Disease Forum » Support Forum » Undiagnosed Club » Undiagnosed with Fistulas

10-13-2015, 10:23 AM   #1
Join Date: Oct 2015
Location: Glen Rock, New Jersey
Undiagnosed with Fistulas

I have had only two episodes of abdominal pain (Terminal ileitis) within the past year. Both episodes brought me to the ER with a CT Scan indicating the aforementioned. I have only recently developed anal fistuals which my brought me to seek a GI. Colonoscopy biopsy didn't show crohn's. But my ileum has only been inflamed twice in my life and for only about a period of 12 hours.

Long story short, the only chronic symptom that I am displaying is the anal fistuals. They are not too bad, just hurt when I make a bowel movement.

I am super scared about Seton surgery.

Any advice would be greatly appreciated!
10-13-2015, 10:59 PM   #2
glum chump
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Join Date: May 2010
Location: British Columbia

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Hi AdmiralLopez

If you head over to the Surgery section of this forum, there is a sub forum there that has all kinds of posts on fistulas, fissures and abscesses. I'm not techno-smart enough to send you a direct link to it, but you'll probably find it easy enough!

Fistulas are not fun...I hope you get some healing happening really soon.

10-19-2015, 10:21 AM   #3
Join Date: Oct 2015
Location: Knoxville, Tennessee
Admiral, I spent about 5/6 months losing weight and carrying a fever between 100-103 before we figured out I had an infected fistula. I can't tell you how miserable I was. Seriously, I cannot use a chapter in a book to describe the exhaustion I had, weight loss...

They put a seton in me. I had it taken out about 3 weeks ago after having been in me for 1 1/2 years. It wasn't a big deal to get installed nor was it a big deal to get removed (both happened during a scheduled colonoscopy)

It WAS however, "annoying". It was always in the way. I went out of my way to try to keep things clean near it. It would sometimes get 'swallowed' up the butt and I'd have to pull it out. It was only maybe an inch long so it's not like it was going to do anything. Being relatively firm string, it could at times, rub or pinch and irritate me.

Still.... for how deathly exhausted I was prior to having it, I'll take it any day.

My weight had fallen from 185 down to about 129. Literally, within 10 days of having it installed (and the infection cleansed), my weight shot up to 150 and today it hovers around 145. My wife was feeding me like a pig during this time so some of that was likely dead weight from having a lot of food inside of me.

Do the seton, it's nothing to be concerned about and, might save you some other issues (infection) that can really knock you down.

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Undiagnosed with Fistulas
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